My Mom did get discharged from the hospital today after having a really rough time with her treatment. She did complete 2 weeks (out of 4) of the chemo and 37 out of 40 IMRTs. She was mentally and physically defeated from this very agressive approach that the drs used. She is finally able to tolerate some form of nutrition for the first time in weeks so they did release her. The dr will have her come back weekly as she is recovering and they said a scan will take place in approx 2 months. She has no interest in any further medical treatment (understandably so) but my concern is that we did not finish the entire regime. I know you guys are not doctors but have seen and lived enough around this wretched disease that I look to you for advice:

Should I put pressure on my Mom to go onto MD Anderson for an evaluation? I doubt that she will ever consider taking any more chemo but perhaps a selective neck disection should be considered. What are your thoughts on this? How long should we wait to make this decision and get her there. She is so happy to get home that I know she will not like this idea right now but I am absolutely horrified of a reoccurence. Her doctors are giving her the impression that they feel her treatment was enough. If that was the case why did they originally schedule her for more? I would appreciate your valuable insight! Also does anyone have links to cases/stories covering surgery post imrt/chemo? THANKS!!!
Tami

PS just to reiterate her diagnosis: based on a ct scan and biopsy she was initially dx as stage 1 bot scc. Before they began tx they did a Pet scan and found 1 node involved and a 2nd small tumor on the right side of the tongue. Therefore her stage moved to 3.

Tami--

Your mom has already had more treatment than most of the folks receiving chemoradiation -- where 33 treatments of total 66 Gy seems to be the norm (it is at Hopkins). And this is for Stages III and IV. Most receive 3 cycles of chemo if they are getting cisplatin, not 4. Was she ever a smoker? If not, has her tumor been tested for human papilloma virus? This typically presents in tonsil and base of tongue (may met to nodes) and has a much better prognosis and response to treatment.

Most of the docs here at Hopkins do not feel my husband will need further treatment (read surgery) after he completes his chemoradiation on Sept. 26. In any case they would do follow-up scans at one month before even considering anything more. (He is HPV-16 positive).

Gail

Thanks for the quick response Gail-
I am unsure if she was ever tested for the HPV. What phase of this process would they have tested her for it? The ent or oncologist? I asked her about it and she said it was never mentioned to her. But yes she was a smoker up to the day she found out she had cancer (40 yrs). Brian had thought maybe that is why they went so crazily agressive on her. I am also concerned about cancer lingering in the nodes but showing a good scan initially. I just don't think she can handle a reoccurence. I feel like this nightmare is never going to end.
Tami

Hi --

Usually they (that is, Hopkins) test for HPV in people with HNC who have never smoked -- as to when, as long as the tumor sample is available, it can be tested but I am not sure that they would test if the person were a smoker.

Gail

Hi Tami! Well, this is very difficult-I would not pressure her to do anything. More, give her lots of information and support her when she makes the decisions, you know? It is ultimately up to her. Having said that, I feel so sad for you and I so relate to how you feel. Ultimately, do you believe that we really have control over any of this crap-ola? Ugggh. I am so happy she's home and comfy. Have they talked about surgery? From what I've read, the dudes and gals here say the surgery is a breeze compared to the radiation/chemo. It sounds as though your mother would feel like sliding down a banister of razor blades would be a breeze compared to what she went through. How hard for you to be so far from her!

Gail,
It might depend on how long the patient had smoked whether they tested for HPV.

Gail.... Please remember that Hopkins is a unique facility when it comes to HPV. It is a hot bed of research on HPV compared to most institutions, and as such they are sampling people for the virus. At most other institutions this is not routinely done. Additionally at other NCCI's there is no difference in treatment protocols for patients that show a presence of HPV than those that do not. Only because of the research at Hopkins are they collecting samples. As I said in a previous posting, Dr. Gillison at Hopkins who is on the OCF board is a prominent and highly published HPV authority. That program is unique to Hopkins that she heads.

I am not sure if the treatment plan is correlated with whether a patient is a smoker or not because in my case, I have never smoked or drunk in my life, but I was given intensive, concurrent chemoradiation to treat my stage 4 tonsil cancer (T2N3M0)with 4 rounds of cisplatin and 48 treatments of radiation (not IMRT). My oncologist didn't tell me if it was the most aggressive treatment but he just said that it was something I could tolerate. No surgery was necessary after treatment and I am doing fine today.

Karen

Tami, the question I have to ask is how did she respond to treatment? What did the midpoint scans reveal? Was there a "complete response"?

Hi Brian --

Actually have heard of other centers now testing for HPV (this from folks at Hopkins doing HPV research) -- also as you know it is becoming more routine for women (as a screen, not just for high-risk) and hopefully this will translate over to the oral cancer side.
My GYN plans to test me when I see her next week.

As to whether treatment is tailored -- did meet one fellow yesterday who was long-time smoker with stage IV SCC - a bulky mouth tumor and mets on both sides of neck and they are hitting him fairly hard -- using new Erbitux-like drug as induction chemo, daily low-dose cisplatin and IMRT (which is part of the new drug trial protocol.) He said they were going to treat him as aggressively as they could considering his co-existing heart problems, in part because his disease was so advanced and in part because he was a smoker.

The current thinking is that *at some future time* treatment for HPV-positive HNC will differ as the tumors are biologically different (different proteins are over- or under-expressed from usual HNC tumor) and that newer drugs will be targeted to these differences. However this is a long time away, they are still not sure how the virus actually induces the cancer.

Gail

Actually one of the primary and most important modes of HPV's action is known, though not the only mechanism by which it works its damage. The virus interferes with p53 that causes natural apoptosis in cells, creating immortal cells, the most basic quality of a malignant cell.

Cancer treatments even for the same staging of disease around the country vary widely, and are as unique as the doctors training and the facilities preferences where they are working. Variances (some good, some a sign of out dated thinking) definitely exist. Having just come from a conference on emerging and novel treatment modalities of cancer treatment, and as a presenter at this same conference, I am fairly well up to date on what the current thinking is. Remember that a drug TRIAL protocol, which is what you have described, is not an established treatment protocol, as by definition it is still being determined if it is effective. The future is indeed targeted therapies, which were spurred by Irresa, thought by many to be a drug failure. However in approximately 10% of the patients treated with it, it was 100% effective. These patients it turned out had genetic similarities. The idea that mapping of genetic similarities will yield patient specific protocols based on mapping and defining these similarities was given a shot in the arm. One day, it may be possible to tailor a drug and treatment protocol unique as a single individual. The mapping of the human genome (now completed) has subsequently lead us to the conclusion that cancer is not a handful of diseases, but actually hundreds of individual diseases. This exponentially makes that quest for cure more difficult, but it is a matter of time and experimentation to find what works against what. It is likely that the transformation of cancer from a killer to a manageable disease that could be lived with, even without permanent cure, will involve all the above, combined with angiogenesis inhibitors, Cox-2 inhibitors, targeted receptor blockers, and more. Treatment as we know it today will be a dinosaur in the foreseeable future.

But in general given that every hospital has its own guidelines for treatment (even those that generally follow the NCCI guidelines), it is wrong to state that what you are seeing at Hopkins is a reflection of what is happening nationally, or for that manner any other given institution. Do other institutions have research programs involving HPV ongoing? For sure. But sampling of tumors for HPV is not a matter of national routine.

In CA next year cervical exams will include mandatory HPV testing. People who are positive for it will be on a more abbreviated recall for testing, as it is the cause of 98% of all cervical cancers. What the problem really is, is not the fact that you have it now, but this lack of understanding of the shedding process and how you get rid of it through some natural process we do not currently understand, since there is no such thing as a viracide. The rate of re-infection is also an unknown, though clearly an important component, and the fact that there is no reasonable manner to test males for it

However, in a certain set of HPV-positive tumors the viral oncogene is not incorporated into the host cell's DNA and in some it is -- so what is going on is not clearly known -- these again may turn out to be sub-sets of the general HPV+ tumor.

I read an interesting paper which refers to what Brian mentions -- some people seem to be able to rid themselves of the virus -- the study found that ~25% of the women with HPV+ pre-cancerous lesions which were scheduled for surgery (often cryosurgery) had no sign of the lesions when they came in for the treatment. And certainly not everyone + for HPV-16 gets cervical cancer or oral cancer.

Still much to learn...

Gail

Gary-I will ask my Mom about the midpoint scan. The only thing that she mentioned to me about the doctors commenting on her progress was the the Radiation Doc told her that he we very pleased with what he saw on the xray film. According to my Moms perception they were xraying very frequently. Not sure if this was to make sure the location of the IMRT was on target or to evaluate progress. What does complete response mean? She is not scheduled to meet with a doc again for 2weeks. Then she goes in for a check up with the chemo dr. The IMRT doc told her he would scan her in 2 months. I am just wondering if she should consider MD Anderson even if the scan comes clean. I am so worried about lurkers in the nodes.

Gail-will they test you for the virus on the pap? How do they test males?

Gary-any word on when that HPV/gyn test will be standard procedure in NY?

Tami

Gail, while you have obviously boned up to some extent on this topic, the point that I disagreed with in your original post was this. There is no different treatment protocol for someone who is HPV positive and those that are not. To suggest otherwise is misleading. The other information about this research, at this point in time, is not of any usable value to the posters on this board. Actually there are several other articles out there that elucidate the oncogene issue. They help determine if the HPV is a causative agent or a co-factor / facilitator. But again, is there any practical application for this knowledge to patients right now? No. Also you can test positive for HPV and not have any visible lesions, as a matter of fact most individuals do not. So the article that stated that refers to the obvious. Unlike other viral agents, such as herpes simplex 1 or 2, which routinely have distinct lesions associated with them, HPV does not. When it does the lesion is flat, barely visible to the naked eye, not painful, and the positive person would have no indications that they have it. You can test positive for HPV and have no lesion associated with that positive result. All this information is interesting but not usable. Since it will invariably come up, there is no safe sex with HPV. Because it is an epithelial to epithelial transfer and not a fluid transfer, condoms do not protect you from it. There is also no evidence that with a positive HPV individual that the virus is transferred via the blood from the cervix to the oral cavity or any other definable location in that individual at this time. It appears to stay localized, unlike herpes simplex which lives on the ganglia and can unilaterally disseminate itself to multiple locations in the same person.

There is no practical way of testing males at this time.

You guys are somewhat to way off subject. Tammi's mother is not interested in this science, Tammi wants to know if her mom has recieved adequate treatment or if she should seek additional insight.

Hi Tami,
to get back to your topic and questions:
The midpoint scan is typically a CT and taken to check the progress of the treatment plan and make adjustments if necessary.

The weekly x-rays on the LINAC are more of an alignment check and have little diagnostic value from what I have seen.

"Complete Response" means that the tumor has vanished - that it has completely responded to the treatment protocol.

"Lurking nodes" are the reason that the ENT/H&N docs perform the palpation exam monthly or whatever exam schedule she is on at that point in treatment. If the nodes are enlarged, they will have an almond shaped feel to them (so my H&N doc tells me). They also do a "visualization" exam with mirrors and occasionally a nasolaryngoscope (more so in the beginning - I haven't been scoped in 2 years).

I saw all three docs at 6 week intervals in the beginning, especially when I was still suffering from the treatment side effects but now I see the H&N surgeon every 4 months and the other 2 every 6 months. I have bloodtests done every 6 months and an annual MRI and chest x-ray.

It's great that she had IMRT. It took me 18 months to get my salivary function almost back to normal and I am fine now and enjoying life with a whole new appreciation. Hopefully your mother will get there too. As I said earlier, I had my Cisplatin shortened to 2 treatments because I reacted so horribly (or so well) to it.

Thank you!
Tami

This IS off-topic so will be short -- I did not say there is currently a difference in treatment for HPV+ and non-HPV+ HNC -- I said that many researchers feel that the biological differences in the tumors will eventually lead to a more targeted treatment for HPV+ cancers, which might include a vaccine. This is in several of Gillison's papers as well as in papers from other researchers on the subject.

Not that this helps anyone right now, other than having a more favorable prognosis.

Gail

I have avoided getting involved in this HPV thing because there are clearly people smarter than me involved. My issue is that the less knowledgeable of us could take the HPV posts the wrong way and call into question our treatment choices. Could I have had a more favorable prognosis if they had checked my tumor for HPV? I doubt it. We have had brief postings on HPV before but this time it just will not go away. Can't this entire issue just be chalked up under ongoing research and end today?

Mom seems to be getting more down and out. She is home and not making much progress as of yet. Her mucous is gagging her and creating more problems. She has no interest in eating and doesnt like using her peg. She is almost 3 weeks out from her last IMRT and last chemo cocktail. Should she be feeling this crummy still? Is there a prescription for thinning out this mucous? She currently is not on anything for it.

Tami

Yes - this is the the most difficult time of all. The radiation continues it work for several weeks post treatment so it is no surprise that she is still on a downward spiral. The good news is that she is right at the turning point. Remember that progress is measured in three week increments at this points - in other words verrrry slow. It takes much patience to get to the other side. This is also when depression most commonly sets in.

The mucous thing should resolve pretty quickly.
Some people have had some luck with various decongestents.

She has to eat - she needs nutrition for faster healing. I had to force myself to eat. She'll feel especially crummy if she gets dehydrated also.

Tami, I totally agree with Gary. My father had hit another wall with feeling awful. He almost didn't get his last chemo so they hydrated him in the hospital and he was a new man. So much that he was eager to get his last chemo. It is amazing seeing the change in him when he gets his fluids. In fact, today he just went in to get a liter infused for the heck of it. He feels so good, which is a blessing considering he has ONE MORE radiation tomorrow!! Honey, I'm very concerned about your mom's nutrition/hydration. Does her insurance cover home care? They can come out to her and infuse. She will feel physically better for sure.

Thanks for the replies.....
Prior to discharge I faxed the doctor a letter of things I would like in place for my Moms care at home: I asked for a script for the feeding pump (slow drip). It worked well in the hospital vs. the gravity seringe method. I also asked for a visiting nurse for the first few weeks. The doctor approved and the nurse went to set it up and she denied both of them. I also asked for a referral to a psychologist which I beleive she also refused. This of course was very frustrating. But due to your story with your dad and how well he felt with the iv fluids I will revisit this topic with her today. As far as depression goes.....it is so hard to determine if it is setting in when we are 600 miles apart. She also told me that her 100 mg of fentanyl expired on saturday and they (her and her husband) did not realize it until yesterday. That obviously may have alot to do with her feeling crummier than ever. Oh how frustrating it is to have her so sick and be so far apart. All of the family is in NY. Her husband is the only one in TX with her. I can't be there more since I have 2 small kids and a husband that works 70 hours a week. Very very frustrating!
Tami

Tami, it appears that you are very invested in your mom's well being. (I can relate) Can you bring your kids down there temporarily? Do you have other family where you live that could maybe stay with them? I stopped my life to help my dad. I was so scared-in fact, I took an unpaid FMLA leave. My hubby and I have made it and now my dad is DONE. A temporary glitch in life could work out. Of course, I don't know your situation at all, I'm just throwing things out there. Your mom's non-compliance is a definite barrier to survival and recouperation. I am so sorry, I could not imagine going through this. Would she come to you?? I brought my dad kicking and screaming to my place--Uggggh, poor thing.

Well Mom seems to making some progress this week. She is up and about. She actually drove herself to Walmart this week. (I was not happy about this decision while still being on pain meds). She sounds better and her voice is coming back but she is only eating 2 cans of that nutrition drink a day. She still has no appetite. My Aunt is flying in to see her this weekend and will spend 5 days there. This should help with her spirits.

Yesterday she had told me on the phone that if she has a reoccurence she will not treat it. I don't know if she could have any further IMRT anyway (37 at 165 gy). But this decision of hers makes me feel stronger about getting her to MD Anderson for a consult on a modified neck disection to remove the nodes. Just as an added insurance policy. She is only 59 and was so full of life prior to the cancer treatment. This is so unbeleivable that she has already made the decision to not to treat any reoccurence. I anticipated that she would feel this way but it was not good to actually hear her say it. I know she has gone through living hell this summer and I can't judge her decision since I have not walked in her shoes. I just don't like it from a selfish stand point. She is my kids only Grandmother. (Both of my husbands parents have passed). I wish I could go there (TX) more often but my oldest daughter is in 2nd grade and I can't just pull her out of school. Ideally I am hoping she will move back to NY but I am not going to talk to her about this until she is stronger. (mentally & physically). Right now we are just playing the waiting game for the scan.

Gary-she does recall getting a CT after beginning IMRT but she does not beleive it was at the half way point. I will be calling the RAD doc today. Unforunately he never returns my calls.

Has anyone had an ultrasound on their corrated artery after having rad? To rule out any blockage?

Tami

Tami,

I know many at this point in treatment that have vowed to not go through any more treatment for a recurrence. As a matter of fact, many people (myself included) were adamant that they would never go through radiation. Yet, when you hear a doctor lay it on the line and tell you the alternatives, staying on this side of the grass suddenly becomes your driving force in life.

I am glad your mom went to Wal Mart. I know she shouldn't be driving with the narcotics but she is taking a step to gain some control in her life. This is a good sign.

I had some issues from the end of treatment and even still experience some of it. When I stand up or I use my muscles to urinate, I see a white flash. I used to pass out at this point. (Excuse me for being so graphically gross.) The doctors did the ultrasound on both carotid arteries and there was no blockage.

I also had a bone scan only to find out I had developed arthritis in my hip and shoulder and had 2 broken ribs from falling when I passed out or the car wreck...I guess that's another couple of stories for later.

I know this must be terribly rough to be so far away and only get the glimpses of the extremes. Hang in there and work towards getting your mother back in control of her life. She will benefit immensely and the side-effect is that you will rest easier.

Ed

Hi-
Just had a question....Mom's blood pressure started getting low again since the weekend. (68/47) She didnt have a very good day yesterday. Started vomiting again.... Here we are almost 4 weeks out from chemo/imrt. Is this normal? Is the blood pressure dropping again from the effects of the chemo? The weird part is that she normally had high bp since she was in her late 30's (now 59) and was on bp meds until she started her cancer treatment. I asked her to call her dr. and get an appointment today. She has one schedule with the chemo dr for a checkup on wed but I don't want her to wait. Let me kow your thoughts please. Thanks!
Tami